Labour of love! - Parents making heavy sacrifices to care for children with microcephaly

Parents raising children with microcephaly - an abnormal growth of the brain and stunting of the growth of the head of the foetus, arising from infection in the first months of pregnancy - are making heavy sacrifices for these children who require special care throughout their lifetime.

Former chairman of the Medical Association of Jamaica (MAJ), Dr Shane Alexis, and the current chairman, Myrton Smith, used a recent Gleaner Editors' Forum to outline the pressure faced by parents whose children have this birth defect.

"Caring for a child with microcephaly is really hard. These children grow and I have seen parents trying to lift them up. It's all well and good when they are small and are easier to carry around. When they get bigger, real problems present themselves, it becomes a labour of love," said Alexis.

"The microcephalic child requires a lot of attention, hugs and kisses. Don't just focus on the head alone. There are many other issues which will require visits to specialists. Our hospital network only has specialists at certain clinics.

"That means you have to traverse parishes in one day to get treatment. Each clinic has a different day so that's several days," added Alexis.

 

Economic impact

 

He argued that some parents may not be able to earn a living to take care of the child, because of the special needs of someone with microcephaly.

"So if you multiply the number of children with this for the last 10 years, given all the things we mentioned before, then you will see the economic impact on these families.

"Working at the Bustamante Hospital for Children, seeing these children and getting to know the parents over time, it's a real labour of love. It's a fantastic thing to observe them and the connection they have with the child that many of us may not understand.

"And the support services such as schools, day care, all have an economic impact on the families. So it's not just a medical impact. It has an economic impact," noted the former MAJ president.

For Smith, who is an ear, nose and throat (ENT) specialist, treating children with microcephaly require special medical care, especially in the parts of the body in which he specialises.

"Many times, these children need special attention, and there is an additional cost to this. But if you want to get the best out of them you have to focus on the special education that is needed to maximise their potential," said Smith as he brought the forum's attention to a microcephalic young blogger, whose potential was being realised.

 

Surgical challenges

 

"Working in ENT and head and neck, there are times when we have to do a procedure on child with a congenitally small head in order to facilitate not just how the child looks, and which brings with it surgical challenges.

"The airway is usually smaller, so sometimes we have to expand the head in order to increase the airways. These are some other issues that can arise," explained Smith.

Due to the outbreak of the mosquito-borne Zika virus (ZIKV) in more than 26 countries, including Jamaica, serious concerns have been raised about the virus' link to microcephaly - an abnormal growth of the brain and stunting of the growth of the head of the foetus.

Babies who develop microcephaly in the womb may not live to full term and may be born prematurely, stillborn or survive with lifelong disabilities.

According to available data, between 2009 and October 2015, Jamaica recorded 35 cases of microcephaly. There were six cases in 2009; 10 in 2010; four in 2011; seven in 2012; six in 2013; and one case each in 2014 and 2015.